Help Daryna Access IVIG Treatment for Myasthenia Gravis

Sarah Payne is organizing this fundraiser.

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Daryna is a 28-year-old woman living in a war zone in eastern Ukraine, fighting a rare neuromuscular disease that requires urgent IVIG treatment. Before illness, Daryna worked in IT, held two degrees, traveled, and lived a full life. Let’s help her get back to a normal life!

I’m creating this GoFundMe on behalf of my dear friend Daryna, who I met while working and living abroad in Denmark in 2022. I went over for fun, she went over as a refugee from Ukraine when the war started. We met just before she took sick leave and then continued to grow our friendship after she became too sick to work. After a few months she decided to try to recover back home in Ukraine, but her health only deteriorated further, all the while facing daily bombings.

Back in Ukraine, Daryna was diagnosed with myasthenia gravis (MG), a rare and sometimes life-threatening autoimmune disease that weakens muscles, affecting speech, swallowing, and even breathing. She can’t work or care for herself and is running out of support. Recently, her health has worsened, and the only treatment that has worked so far is IVIG infusions (Bioven). Despite being a nationally recognized condition, the government told her they can't provide any support unless she is in the ICU, so she has to go through private healthcare.

Daryna and I at a work event in Denmark.

From Daryna:

"Hi, I'm Daryna. My symptoms began after I got sick with COVID. The first ones were weakness, double vision, dizziness, fatigue, and sore throat. But I was trying to work and study. I was on sick leave, trying to figure out what was going on, when the full-scale invasion began.

Already sick, I fled to Denmark, started a job there, tried to rebuild my life. At the same time, my health was declining. I took a sick leave after a sick leave, and couldn’t go out or do anything leisurely.

Without doing any tests, doctors told me it was stress. I followed their instructions to exercise more, do yoga, etc desperately trying to get better, but I deteriorated even more, to the point that I lost my job, and had to return to Ukraine.

After a year of never-ending doctor visits, I was finally diagnosed with Myasthenia Gravis, a rare neuromuscular autoimmune disease, and ME/CFS, a neuroimmune illness often linked to Long COVID.

At a point when I was diagnosed, I had already started having trouble breathing. In January this year, I was prescribed prednisone for Myasthenia Gravis. After starting it, I found out that my body couldn’t tolerate it: I deteriorated rapidly within a few days, to the point when I could barely breathe or swallow. I got hospitalised.

At that point, I couldn't chew food - I had to get it blended for me; I couldn’t speak - to communicate, with lots of effort, I typed short messages for my close ones in a notes app. I couldn’t lift a water bottle or open a pack of pills - I had a friend come daily and help me with basic stuff like that. I was bedbound, extremely light-sensitive, and suffocating constantly. It was the scariest time in my life.

Despite all of that, the governmental clinic denied me the very medicine used in severe cases like that - intravenous immunoglobulin (IVIG), an expensive, but very effective medication for cases exactly like that. I was told that I would only be given it if I deteriorate to the point of being put on a ventilator in the ICU.

I knew I had to do something because I felt like I otherwise wouldn’t make it. With the help of friends, I managed to raise enough for one round of IVIG.

IVIG helped! My breathing improved. My paralysis eased. I no longer needed to communicate in gestures. I could chew and swallow again.

But the effects were temporary. I never improved past the fully homebound levels, and I am still mostly bedbound. Recently, I started having pre-January symptoms again - same ones I had before my myasthenic crisis - trouble breathing, sometimes chewing, and swallowing. I get severe weakness in my diaphragm even after I talk for a bit. I get severe weakness in my muscles after a mild activity. I am prescribed a thymus surgery for my Myasthenia Gravis, but I won’t be able to endure something like that now - I can barely function.

My doctor said I need several more courses of IVIG to stabilize. That’s why I started to try and raise money for my treatment. I contacted multiple charities. Only one agreed to donate 50,000UAH ($1,250). I raised 65,000 UAH ($1,625) via Instagram, but then the donations stopped."

Receiving an IVIG infusion

Daryna is bedbound and struggling to breathe again. We are scared that without treatment soon, she will enter a myasthenic crisis, which would cause sudden respiratory failure and require being on a vent.

I’m aiming to raise $14,600 to cover the 4 rounds of IVIG: 10 vials of IVIG for stabilization, followed by 5 vials monthly for 3 months.

Treatment Summary

Total needed: 25 vials

Cost per vial: 28,000 UAH (~$700)

Total cost: 700,000 UAH (~$17,500)

Already raised: 115,000 UAH (~$2,875)

Still needed: 585,000 UAH (~$14,600)

This is an urgent, life-saving medical fundraiser. Every dollar will go directly to Daryna’s IVIG treatment!

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